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Health promotion and community care: the perceptions of users, purchasers and providers of community care services

Contents:	Acknowledgments Summary Introduction Glossary (I) Glossary (II) Glossary (III) Chapter One Chapter two Chapter three Chapter four Chapter Five References (I) References (II) Appendix I: Note of methods Appendix II: Focus group topic guides Appendix III: Telephone interview schedules Appendix IV: Programme of discussion days Appendix V: Research participants

Chapter Five

action point

feedback from service monitoring (including user feedback)to commissioning

Something to hope for should be taken to include the rightto advocacy and a meaningful political voice. The marginalisation experiencedby many of the community care users and carers who spoke to us suggests that astronger voice is an essential precondition for meeting their needs. Equity isanother inescapable concept when trying to frame the needs expressed. Users andcarers frequently described a lottery in access to resources, services andopportunities, with the implication that needs had to be enshrined in rightsand translated into standards whose consistency could be measured. Peopleacknowledged that basic needs had to be met but that quality of life also meantmore than this. Quality of life included the means to have social relationshipsand to feel connections with other people.

One of the main purposes of this study was to try andunderstand how the needs and perceptions of community care users and carerscould inform the practice of health promotion and community care and how, inturn, Health for All principles might inform the development of strategies tomeet health and social needs. By using a qualitative methodology we haveconcentrated on perceived needs, but we have not taken the view that felt needsare the whole story. Our interpretation rests on the understanding that people(and not just users and carers) may not be able to have an overview of all thataffects them because of the restrictions of the context in which they live andwork. In this study we have tried to make this a strength by exploring theextent to which needs and the way they are perceived differ according tosituation, whether that is the type of disability experienced, age, gender orthe area where you live. We have relied on the experiences of users and carers,as well as of professionals, which speak with their own integrity. Moreover wehave used a pluralist, some might say, saturation, approach, speaking to a widerange of user and carer groups, including groups that have not consistentlybeen spoken to in community care consultations, and people with differentpolicy perspectives. The major needs identified have not been selected from asingle source or a unique experience but are cumulative messages from theexperiences and perceptions of many people.

There is considerable literature on how policies shouldaddress the satisfaction of needs and, in particular, whether strategies tomaximise income should be the priority or whether the direct satisfaction ofbasic needs would result in more equitable and effective change. We haveaddressed the relationship between needs and strategies for change by askingpeople about what gets in the way (barriers) and what could help them have abetter life (enablers). There is a remarkable consistency in the broadformulations of problems and solutions across the user and carer groups on theone hand and the professional and policy respondents on the other, althoughemphases may differ. Many of the most concrete recommendations derive from theuser and carer groups or from people working very directly with them. Thisresearch therefore has implications for consultation. It strongly supports theview that users and carers know a great deal about how services could moreclosely address needs and what stops them from doing so.

In addition to the importance of the issues of user voiceand equity in considering the needs of community care users and carers, theneed of many for care and support has to be taken on board. For many peopleindependence and a good quality of life are only possible with access to careand services. This may complicate discussions of need conceptually but it is avery important point for understanding the extent to which issues of serviceavailability and manner of delivery predominate in this report. The argument isnot about whether people with these needs should have services but how theyshould be delivered and who should control access to them. Recognition of theneed for support in no way undermines, as our discussions with users, carers,purchasers and providers made clear, the right to autonomy and independence.

Frameworks of understanding

Our brief, to look at therelationships between health promotion, community care and Health for All, atfirst seemed elusive and complex. Now that the research is complete certainclear themes that have emerged make the task seem relatively simple.

Users and carers described their aspirations in reasonablysimilar terms. Like those of any human being (see section on needs above) theyincluded being as independent as possible and being a part of society. We haveused the framework of needs to structure these dimensions of everyday living.They are compatible with the areas identified in theory and research (as wellas by common sense) as components of quality of life. We like the term‘quality of life’ because we think it helps to focus on how actionsthat address the specific barriers that people face to living a ‘goodenough’ life can be expected to result in gains that health and socialcare agencies can appreciate as relevant to their goals. We have tried to show,through our analysis of action areas in chapter three, that the experiencesthat users and carers discussed did effectively make those links between whatspecifically needs to be done and the impact that such changes might beexpected to have on the quality of life and users and carers.

To take a very simple example, training of public transportstaff in disability awareness would overcome some, though obviously not all, ofthe barriers which prevent many disabled people from having easy access topublic transport. We would expect gains to include: more disposable income forpeople not having to rely on private transport alternatives; more freedom toattend leisure and other opportunities that increase social contacts andwell-being; and an increased opportunity for those hitherto disenfranchisedfrom getting on public transport to get out and feel less isolated.

We would argue that a quality of life agenda, which takesinto account many dimensions of experience and the self-evaluation of valuesand priorities, could provide a useful way of thinking about the potentialrelationships between health promotion and community care. It was a sharedproblem analysis by many user, carer and professional groups that basicservices and this would include the way that many community care services arecurrently delivered, amounted to enabling survival, rather than living in thefullest sense. This was one of the reasons for dissatisfaction with the qualityof care received. A focus on a more positive agenda, the maximisation ofquality of life, would address the goals of both users and of community carepolicies. It would also directly address the determinants of independence andintegration that are key objectives for community care. An obvious example isenabling older people to be active, as distinct from leaving them relativelyimmobile while receiving expensive residential or home support. Another, morecomplex example is supporting communities to be more accepting of people withlearning disabilities living in the community so that they are not isolated intheir accommodation in contact only with paid carers, but have opportunities tomake friends. In both cases specific gains in terms of well-being could beidentified. We refer to well-being and quality of life rather than health inorder to reflect the holistic view of needs that users and carers, and manyworkers presented and to ensure that health and social gains are identified assynergistic rather than separate.

action point

stronger focus on quality of life in individual assessment,service specification and monitoring

Health promotion, it can be deduced from the professionalswe interviewed, is one, although not the only, source of expertise andmethodologies for developing practical strategies for improving quality oflife. The generic skills required, according to the action areas identified,include: enabling approaches; skills in working to change attitudes (of thegeneral public), in training (particularly for providers), in advocacy, needsassessment and preparing and disseminating appropriate information and,experience of community development, networking and the promotion of jointworking in order to overcome some of the barriers identified to more enablingpractices. We saw in chapter four how many other professional groups, includingcommunity nurses and social workers have these generic skills. It was in thissense that many workers in community care saw health promotion as part of theirrole, at least as they would like to exercise it. Specific roles for healthpromotion (as an NHS speciality) may lie in making the argument strategicallyfor the importance of quality of life, in suggesting the most effectivemethodologies for producing gains in well-being and in linking the informationabout gains in well-being back into practice and commissioning. Healthpromotion is an approach, not a defined set of activities. A narrow definition,that sees it as the responsibility of a particular profession within the NHS,may hinder the adoption of health promotion principles across a wide range ofagencies.

action point

simplification of organisational settings in healthpromotion and community care to facilitate effective alliances

equity and health for all

Independence and integration are key goals of communitycare. Yet the experiences recounted in this report indicate that community careusers and carers consistently suffer marginalisation and isolation. Manyfactors contribute to this and have been illustrated frequently in the reportfrom different perspectives. Patchy services and gaps in basic provision exposeusers and carers to a lottery in which they cannot rely on the availability ofessential and appropriate care without which they cannot participate in areasonable standard of life. The attitudes of the public and of providers anddiscriminatory practices by agencies exclude people from access to those verymeans that we described as essential for a ‘good enough’ life:including appropriate housing, social participation and a job. Not being heardfurther reinforces marginalisation. Equity and a rights based approach aretherefore key concepts in addressing the reasons why a focus within communitycare that remained limited to the needs for care among the so-called prioritygroups will consistently fail to deliver effectively or efficiently oncommunity care goals.

Health for All which, as we saw, does not really have anycurrency within community care at present, does not have a monopoly onstrategies to achieve equity and social justice. There is a strong traditionwithin social work, local authorities more widely and the voluntary sector ofequity strategies and there is at least a subculture within health provisionand purchasing that targets health inequalities as an overarching theme.Arguments for improving the well-being of community care users and carers,therefore, can address equity issues in many arenas, including povertystrategies and housing. Health for All does, nonetheless, provide at least twostrands of analysis and experience that are useful in focusing action on equitywithin community care. The first is promoting strategy development and workingbetween services and pointing to the relevance of a range of public sectoractivity to well-being. The second is a focus on working with people in a givenarea, a city or a neighbourhood and highlighting what action they can besupported to take to improve the determinants of well-being in thatenvironment.

Arguably one of the reasons for the low profile of Healthfor All within community care is that Health for All takes a broad, holisticperspective, whereas community care has been concerned with particular prioritygroups and, initially at least, with some specific changes to service processand practice. It has emerged from this analysis, however, that in terms ofmeeting needs the way that the community care agenda has been set may have beentoo restrictive and that this is ultimately counter-productive becauseresponsibility for that agenda may not be acknowledged outside of thoseagencies with responsibilities for funding, commissioning or providing specificservices. This report suggests that users and carers see their quality of lifeas dependent to a large extent on the quality of life in their communities. Thedevelopment of more inclusive communities is clearly an agenda of greatrelevance to, but not limited to, community care. Where Health for Allapproaches would seem to have a role is in showing how an integrative frameworkcan be developed across agencies to address needs holistically. The emphasiswithin Health for All on empowerment and participation is paralleled in healthpromotion and community care values. Health for All brings a specific focus oninequities which arose often as an issue in this report. Community action andthe linking of community and strategic action, a Health for All principle,seemed to rise up the agenda as an area for development when we asked groups tofocus on community care from the perspective of health promotion and quality oflife. This research also suggests that an important possible gain from thebringing together of agendas around quality of life, health promotion andcommunity care is a strong case for the importance of anti-discriminatoryattitudes and practices, and ultimately for the relevance of the principles ofan inclusive society even for apparently narrower policy and practice goals.For health promotion there might also be specific gains such as an increasedawareness of the importance of caring roles.

Many of the action areas highlighted by community care usersand carers and workers who advocated for them concerned not community careservices per se but other public services, such as transport. Yet theinterviews with local authorities indicated that, at least from the perspectiveof social work, the relevance of transport to community care is not understoodoutside of those directly concerned with community care provision. In order todevelop greater ownership of this and similar issues strategies are needed toheighten the awareness of other local authority services of the needs ofcommunity care users. Health for All is one example of the kinds of joint forathat can be developed to address this problem. Joint working groups can bringin skills from across sectors and may influence the agenda if they have accessto the strategic level of the joint planning process.

Some of those who gave their views in this study saw thehostility of people to new community care residents in communities and theburden imposed on people in communities by taking on caring responsibilitieswithout adequate resources as very important issues that were not really beingaddressed. Local development work with communities was felt to be a priority,to change attitudes but also to build capacity in those communities. This mightinvolve, for example, intermediate employment schemes that developed supportiveemployment, perhaps in the social care market.

Whether or not Health for All is the mechanism, a focus onintegrated planning for local areas; on community care users and carers aslocal residents and contributors to society; and on community care agencies andworkers as partners in local development and regeneration, could address one ofthe inherent weaknesses within community care. Local Agenda 21 strategies serveto point up the links between health and environmental concerns at the locallevel. Initiatives to foster more direct local democracy in planning could alsobe seized upon for their relevance to community care planning. The focus onspecific care groups, while logical and even essential historically to increasetheir priority in policies and to target resources and services upon them, canbe counter-productive, isolating and even stigmatising if applied at thecommunity level. Complementary action in local areas, alongside thecommissioning of community care services, would complete a missing link in thechain to create integration and might even have exciting possibilities formaking the social care market work productively for the benefit of localpeople. We saw from almost every set of discussions and interviews conductedthat, where community care has a poor image, this is connected with scepticismabout under funding and the withdrawal of services. Involvement with localeconomic strategies would not solve the funding issues but might go some waytowards improving the balance of gains and losses for local communities.

action point

advocacy for supportive environments in training, theworkplace and communities, including attention to economically productivestrategies

rights

The other element in a framework for improving thewell-being of community care users and carers is to address the discriminationwhich is commonly experienced. This includes the protection from abuse and mayoften entail the provision of advocacy to ensure rights. Disabling environmentsand practices in work, leisure and every area of life exclude disabled peoplefrom participating in everyday activities and impose additional costs (economicand emotional) on them, as was illustrated by our discussants.Anti-discriminatory policies and standards for service access are generallyagreed to be the best way forward to ensure that the burden of change falls onthose whose responsibility it is to provide barrier-free environments, ratherthan on those that experience discrimination. This is another area wherepractice might benefit from a common framework across agencies and from jointtraining. Nonetheless listening to disabled people would increase theefficiency and effectiveness of many public services.

action point

policies on anti-discriminatory training and standards foraccess to services

Barriers

Despite the argument we have made, there was precious littleevidence, either from health board purchasing or from local authority planning,that quality of life was anything more than rhetoric or a luxury. Moreover thelinks between community care services and other strategic developments wererarely explicit, while one of the greatest problems experienced by caremanagers, front line providers in all agencies and community care users andcarers was inflexible budgets and increasing demarcation between health andsocial care. Many professionals told us that they did not share the sameassumptions or even language as colleagues in other agencies and that thepotential for collaborative working was being seriously undermined by argumentsabout who should pay for what, particularly in relation to health and socialcare.

In fact what people in different agencies actually saidabout their goals and the contexts in which they worked had many parallels. Weconclude that the lack of a common framework for understanding the needs ofcommunity care users and carers is a major obstacle to developing joint andbroadly based strategies. In particular it prevents information about thegains, in terms of well-being for example, of a wide range of policies andpractices having impact and being fed back into service development. It isinteresting to speculate whether a public awareness campaign to promote morepositive attitudes could, as part of an integrated strategy, act as a triggerfor a professional re-examination of frameworks and priorities.

Organisational remits and responsibilities

Two issues that were common across nearly all theinformation sources for this study were the perception that, driven by budgets,organisational boundaries were being more tightly drawn and, thatresponsibility for the area of quality of life for community care users andcarers was not really owned anywhere, except in very general terms, at astrategic level. Territorialism mattered because, as the interviews withprofessionals showed, it not only impeded communication but had a direct impacton the availability of services. For users and carers the effects of theraising of drawbridges between health and social care meant gaps in servicesand reduced choice, because more flexible services often depended on jointworking. This could be directly counter-productive for the goals of communitycare because it could lead to people having to be transferred to institutionalsettings if essential supports such as appropriate housing, respite or a nightsitting service could not be purchased.

action point

sharing of expertise through joint training,multidisciplinary team working and forums to promote joint strategy developmenton community care issues

The limitations of agency remits and of professional roledefinition were not only cultural, although we heard plenty of depressinglyfamiliar tribalism. The level of funding available for community care and thedistribution of resources between health and social settings was a majordefining issue which contributed to the marginalisation of more healthpromoting or life enhancing services, whatever the longer term benefits ofthese might be. As the dependency of people in the community, and othersettings, increases, resources are bound to continue the trend to be targetedon those most at risk. We heard a multidisciplinary learning disabilities teamcomment on how the focus of their work was shifting to the more serious end ofthe market and how they would be required to concentrate on, for example,challenging behaviour. This has major implications for the development ofhealth promotion within community care. If health promoters are willing toconcentrate on the well-being of those who are most dependent then they willfind an area ripe for development within community care. Attention to the workthat could be done in relation for example to people with serious mental healthproblems would counteract the image that health promotion goes for ‘softtargets’ in mental health, as one health board purchaser claimed. But ifthe wish is to shift the agenda to action to promote positive mental health inthe whole population then health promotion realistically should probably notlook to community care to engage with this agenda in the foreseeable future,unless there is a sea change that makes more holistic and integrative thinkinga legitimate dimension in priority- setting and decision-taking.

The fissure between health and social care was the boundarythat was of greatest perceived importance for community care users and carersbut it was not the only source of fragmentation. The voluntary sectorattributed to the way purchasing was being implemented by local authorities, athreat to their role as advocates and a counter-productive risk to theviability of many, particularly small, voluntary sector providers. Competitionamongst providers in the voluntary sector was considered to be yet anotherreason why it was hard to develop a strong strategic voice in this area.

Our interviews with purchasers and providers in the localauthorities and the health boards and trusts revealed how joint planningstructures were beginning to be re-established in the wake of local governmentreorganisation. Whilst for some areas reorganisation brought simplification andgreater coherence in the area served, for others there were a greater number ofrelationships to negotiate across the boundaries between authorities, boardsand trusts. The way that joint community care strategies are developed forpriority groups within this framework is not uniform but if this complexity isreasonably manageable, it begins to look problematic when you add in thefragmentation of personal networks at a time of organisational change and thedifferent configurations in which health promotion is located, organised andinvited to the planning table. It certainly becomes easier to understand why weso frequently heard the lament that nobody knew whom to ring up any more.

The issue-based groups often addressed issues of networkingand inter-agency action and reported that there was no one really accountablefor an issue like improving disabled access. Good practice often depended onthe commitment of individuals and networks were often personal, rather thanorganisational, suggesting that alliances in this area were at an early stageof development. ‘Ad hoc’ was a phrase that recurred in discussions.

Ways forward

Many of the proposals put forward by respondents in thisstudy amount to a multilevel strategy for the development of greater commonground in the area of health and well-being and community care. They include: astrategic push (see below) to raise the priority of quality of life issues withcommunity care joint planning partners; joint fora at all levels to shareinformation and practice and just to meet face-to-face; alliances that focus oncommunity care needs or greater involvement of community care partners inexisting alliances such as those focusing on poverty or urban or ruraldevelopment; the development of anti-discriminatory policies and standardsacross the full range of services; work on public attitudes at national andlocal level; further development of multidisciplinary team working in thecommunity with strong links to primary care and last, but most important, theactive involvement of user and carer perspectives in defining needs andmonitoring services.

leadership

• At national level some participants argued that the government had a roleto improve the funding position of community care by insisting on ring-fencedfunding and through legislation to impose more consistent standards on localauthorities in particular. Others felt that there was an important case to bemade for influencing commissioning and service specifications in a more healthpromoting direction. The Health Education Board for Scotland is known to manypeople through its public information campaigns and a number of groupidentified this as a way that HEBS could promote positive attitudes to mentalhealth and disability. It was considered essential that a strategic lead begiven to some of the key players such as health board general managers andlocal authority chief executives to give health promotion a higher profilewithin community care. A strong voice arguing for the importance of health (nothealth care) to community care has been notable by its absence. Yet to considerthe health impact of community care services and approaches might provide veryuseful information for all agencies involved. There was an equivalent need tomake the importance for raising the profile of community care within healthpromotion. There was less clarity about who should lead the process within andbetween agencies below the strategic level. It was also felt by many groupsthat professionals and agencies should give enlightened support to localcommunities struggling with caring as an added burden.

action point

national and local strategic focus for health promotion andcommunity care

training and information

For health promotion the adoption of a ‘train thetrainer’ role in community care was proposed as the most realistic andeffective way to influence practice, given the breadth of the community careagenda. Almost all other groups also identified training as an important need,professionals to share skills and develop joint working (see above) and carersto be able to do their job effectively and in safety. Active and open exchangeof information was another key process that emerged as important for bringingusers and carers into active partnership with service providers and also asessential as part of more effective alliance building across agencies andsectors. The potential for the application of dynamic training methodologies inuse in health promotion seems strong since the aim is to change both attitudesand behaviour. There is also an important role for feedback from research andother information to spell out to other sectors the relevance of their work tocommunity care.

action point

higher profile for information and advocacy

commissioning

Many of the concerns of users and carers, recounted inchapter three, form an agenda for commissioning, as well as giving indicatorsfor the types of service delivery that would be seen as important. The issue inmany cases, however, is not what but how. Few within community care woulddisagree that more enabling day care support, supported employmentopportunities, night sitting services, transport and information are importantareas for development. The approach suggested in this report, which argues forless of a separation, conceptually and organisationally, between community careand other public services in order to improve quality of life for users andcarers is part of the argument for change: it is what users, carers, andprofessionals say is needed.

action point

development of common framewok to address health and socialneeds through joint forums and commissioning

Summary of key recommendations

• national and local strategic focus for healthpromotion and community care
• development of common framework to address health andsocial needs through joint forums and commissioning
• greater priority to community care budgets anddistribution of resources between health and social care
• commissioning of enabling services to promote qualityof life and autonomy

operational

• stronger focus on quality of life in individualassessment, service specification and monitoring
• feedback from service monitoring (including userfeedback) to commissioning
• national quality standards for community care andcriteria for access
• simplification of organisational settings in healthpromotion and community care to facilitate effective alliances
• demonstration projects in various settings, includingthe community, to develop a health promoting model of community care and toevaluate its effects

training and educational

• higher profile for information and advocacy
• policies on anti-discriminatory training
• sharing of expertise through joint training,multidisciplinary team working and forums to promote strategy development oncommunity care issues
• advocacy for supportive environments in training, theworkplace and communities, including attention to economically productivestrategies
• public awareness campaign to promote positivemessages and anti-discrimination

Discussion and ways forward

Needs and policies

The focus discussion groupswith users and carers about their aspirations and experiences have made apowerful case for the indivisibility of health and social needs. Defining agood life is not problematic and health and happiness were spoken about acrossthe range of user and carer groups. The well-known summary of everyone’sbasic needs may stand:

a place to stay
someone to love
something meaningful to do
and something to hope for.